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offshore
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another newbie
« on: Jun 27th, 2006, 10:47pm » |
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Hi all,
I'm new here and although I wish I didn't have to look for it, I'm glad to have found your site. I suffer from these things but have not been officially diagnosed with CH's yet.
I plan to get in to see a doctor soon. After reading thru some of the forums, I'm happy to say mine are only episodic at this point. Now that I have found out more about them, I realize that I've had them for about a year now. They started as a KIP 6-8 but they would come on with the wrenching pain that would only last for about 3-5 seconds and just go away (I rarely ever had a headache before this). I would say "ow", "OW", "what the hell was that?" Same place as they are now.
Now unfortunately they last anywhere between 20 - 60 minutes at anywhere from a KIP 8-10 . Before I found this site I would way over medicate on a mix of Ibu's, and sinus pill's thinking it was a sinus thing. I start to have some concern about the well being of my liver so I reduce the ibu's to 2 and added 2 aspirin. It may or may not have done anything. Maybe just a coincidence but they would go away and I would fall asleep beat down. Now I still take the ibu's and aspirin when the shadows are there but when it hits added a power drink with 1000 mg per serving of tourine plus guarana. Also some O2 and an Ice pack on the CH side.
Sounds like allot but you all know, what ever it takes.
At this very minute I sit with a towel rapped around my head and an ice pack jammed in tight.
With all this I'd say it hasn't got over a 7-8.
Any way, that's me between my stretches of a normal life with my wife and 5 year old daughter.
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jody
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ShaneM
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Will someone pull this out of my eye?
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Re: another newbie
« Reply #1 on: Jun 27th, 2006, 11:06pm » |
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Jodie,
Glad you are going to see a doc. I have found this to be a great resource for ideas that I would never have thought of on my own and that have never been suggested by the 7 neuros and countless pharms that I used in the past 17 years of dealing with CH. I have been using Melatonin for the last week (9mg) right before bed, and it is starting to show some results. It may work more quickly for you, everyone is different. And, it may get you through the night and help with the daytime shadows. I read a good article just a few minutes ago at this www site http://www.squidoo.com/clusterheadaches there is a "Cluster Headache Therapy .pdf" that has some info about different treatments you want to read.
Good luck
Shane
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Barry_T_Coles
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Re: another newbie
« Reply #2 on: Jun 27th, 2006, 11:15pm » |
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Hi offshore
Sorry you had to find us but you are in good company here, there’s always someone around to help out.
As you say you have not been officially diagnosed with CH's yet and you need to do that along with an MRI to eliminate any other unseen problems, see if you can find a headache knowledgeable Doctor/ Nuro in your area as not all Doc’s are aware of the condition.
My favourite weapon is o2 as I am also concerned about the damage to my liver that can happen with drugs/meds, I probably do enough damage with the Grog without adding to it with throwing pills down the throat.
Welcome to the nut house  .
Kind Regards
Barry
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Richr8
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Re: another newbie
« Reply #3 on: Jun 28th, 2006, 12:24am » |
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Hi Jody! Welcome. You need to get to a neuro and get a firm diagnosis. If indeed CH, I can't say enough about the O2. Get a script and a clustermask:
http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
...as soon as you can. Continue to read all that you can and ask questions. I think all of the answers are here.
Sorry you had to find us, but I know there is no better feeling than when you do. you're among friends now that totally understand what you are going through..
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Redd
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Re: another newbie
« Reply #4 on: Jun 28th, 2006, 4:27am » |
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Hi Jody,
First things first, this is going to get confusing, as we have another Jody here, happens to be my boyfriend, and we both are sufferers.
Second, print off this link
http://www.brightok.net/~mnjday/chtherapy.pdf
The best all inclusive article to take with you when you see a neurologist/headache specialist.
I see you are from Oshkosh, just a hope skip and jump from us here in Stevens Point.
I'm pleased to make your aquaintance.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Killroy 2.0
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Kilroy 2.0 is Here! Kilroy 2.0 is Everywhere!
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Re: another newbie
« Reply #5 on: Jun 28th, 2006, 9:02am » |
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Damn another Person from WI. I got to move to another state  .
Well, welcome....
Sorry you have to be here. Best advice I have for you is READ, READ, READ
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Do the walls speak to you? Do you follow the Geek Messiah? DO YOU COMPLY?!
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Redd
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Re: another newbie
« Reply #6 on: Jun 28th, 2006, 9:14am » |
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Hi again Jody,
I'm just curious, if you haven't been diagnosed as of yet, you must be getting your O2 through a welding set up? O2 for CH needs to be prescribed by a doctor, and even then some insurances you have to fight with to cover it.
Alot of us use Red Bull or other such drinks to help. Ice is my best friend during an attack, but I'll have to admit that if I'm at a 7-8 kip-- I in no way can type at the keyboard. I'm rocking or paceing at that point, and counting the minutes until hell passes.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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offshore
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Re: another newbie
« Reply #7 on: Jun 28th, 2006, 5:23pm » |
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Redd,
"if I'm at a 7-8 kip-- I in no way can type at the keyboard"
Neither can I.
Thankfully it was on it's way down already at the time I wrote the intro.
Your correct on the O2. I got my hands on some O2 for welding and had to try it. (I heard it's the same as medical grade. Good O2 = Good weld)....(I hope they were right)
I was very surprised how well it worked and have only had to resort to it twice so far this week.(I use a small bottle so I use it very sparingly) Otherwise the ice works rather well for me too.
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jody
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Redd
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Re: another newbie
« Reply #8 on: Jun 30th, 2006, 5:55pm » |
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on Jun 28th, 2006, 5:23pm, offshore wrote:
Your correct on the O2. I got my hands on some O2 for welding and had to try it. (I heard it's the same as medical grade. Good O2 = Good weld)....(I hope they were right)
I was very surprised how well it worked and have only had to resort to it twice so far this week.(I use a small bottle so I use it very sparingly) Otherwise the ice works rather well for me too.
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Yes the grade of O2 is the same. just a different valve on the tank and a different regulator. Are you using a non-rebreather mask by chance? One thing to consider with O2, is to hit the attack at the first sign, and the abort is alot faster. Many folks use it as a first line abortive, as not to have to struggle through most hits without relief.
Glad you found your way here. Bring the wife on board too....there is a supporters corner just for her, but she's also welcome to join the rest of us drain bramanged folk too...
Keep in touch Neighbor!
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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offshore
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Re: another newbie
« Reply #9 on: Dec 14th, 2006, 6:53am » |
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Hay CHrs, (Update)
Well, I've been almost PF for the last 4 months with nothing more than a kip 1-3 with the occasioinal 4 or 5. I've been using O2 to abort the more severe ones and this seems to work great. (I told the Dr. this and he didnt seem to impressed)
I havent had a really bad one since early August but as of late my eye was getting red and "puffy"almost nightly with a 1-3 to follow which was a little different than usual and brought on the worry. As a result, I finally made it to the Dr. (I guess I'm Mr. procrastination) and a week later the rusults were negetive for tumor or a mass.
Wah hoo! What a load off my mind.
With the info I provided and with experiences of the fine people here, I think it helped a great deal in avoiding a bunch of useless Dr. visits.
Thank you all.
I go in again on Friday for the treatment stage.
Wishing you a PF holiday!
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jody
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RichardN
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Re: another newbie
« Reply #10 on: Dec 14th, 2006, 11:29am » |
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Hi Jody and Welcome to Clusterville
Do copy the link the Redd715 posted and take with you to your doc appt. (9 pages) which indicates that 02 IS a viable abortive for CH . . . . again, we often have to educate the docs to get treatment that works for us.
I can't use triptans (Imitrex) due to some arterie blockage and high cholesterol . . . so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack . . . . don't wait for the "bad ones" to hit the 02 . . . you stand the chance of the 02 failing . . .generally, if it doesn't work in 20 min. . . it's not going to.
Don't discount the "water X 3" therapy (link on left) I am absolutely convinced water therapy has helped me reduce the frequency/intensity of attacks.
Identify your triggers . . . for most of us, alchohol is a major trigger (is for me . . . quit 2/02 after coming here), exhaust fumes, certain chemicals . . . we're all different.
Spend the $25 on a Clustermasx . . . just got mine within the last week and am VERY pleased . . . more effective and I'm saving 02.
Welcome to the family,
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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